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About suzyq63

We're dealing with two autoimmune diseases so far. Alison was diagnosed with Type 1 diabetes in January, 2008, and immediately started losing weight after diagnosis. She was screened for celiac, but only had a high IgG antigliadin antibodies; other tests were negative. She was screened every 6 months and the numbers started climbing. She was finally diagnosed with celiac (by biopsy) in August 2010. She deals with other non-autoimmune issues, so I really hope we're done with any more diseases!
Paula

Have you tried the recipe using Butter Crisco? I am no expert at gluten-free baking, but I used that recipe and substituted the Bette Hagman blend. I added 1/2 teaspoon of xanthan gum. They came out very well. I even tasted the raw dough; and other than a slight grittiness, the dough tasted exactly like the gluten dough. I've only done it once so maybe I just got lucky.
Paula

Thank you. I only asked about topiramate, so I don't know about any other meds made by Mylan. In the end, we got the prior authorization for name-brand topamax and were able to fill it late this afternoon. I now have to seriously consider if we want to try the generic in the near future. The price for the name-brand went up again (my copay is still the same though). The pills are just over $10 per pill and Alison takes 6 pills per day. That price is utterly ridiculous! Unfortunately, the generic is often not exactly the same as the name brand when it comes to seizures, so it's a tough decision.
Paula

Thanks. I do feel better about using a generic, at least as far as celiac is concerned. I'm still nervous to switch her to a generic due to having such excellent seizure control with the name brand. I'd really hate to lose control. But there's not much more I can do now; we're at the mercy of the insurance company. I should find out later today or tomorrow morning which medication she'll be taking.
Paula

I may have answered my own question. I decided to call the manufacturer of the name brand to ask them about their gluten-free status. They will only say that they do not use and wheat, rye, barley, spelt, etc. in their manufacturing process. They do not test at the end. So I guess that the generic is equivalent to the name brand as far as gluten-free goes. I'm not sure of its efficacy for seizure control since every patient is different.
Paula

Thanks to our health insurance company, my daughter with celiac may have to switch to a generic seizure medication. The insurance company messed up and now she is due to run out of her meds tomorrow morning! I called CVS to find out which manufacturer they use for the generic of topamax (topiramate). I called the company and they said they do not use the term gluten free; they don't do end-of-line testing. They state that "we do not add gluten". The starches they use are corn, rice, or potato. Alcohols are synthetic. So now I'm not sure what to do. We are hoping to get a prior authorization through today so she can continue with the name brand; without prior authorization the insurance will not cover the name brand at all now. The name brand is super expensive; the insurance is paying $1600 per month. There is no way we can pay out of pocket for the name brand.
Would you consider this generic safe? There are 17 different manufacturers of topiramate, but Mylan is the company used by CVS. What do you do about generics? Do you research to find out all manufacturers and then call every one of them and then find a pharmacy that will use whoever will verify they're gluten free?
Paula

Thank you.
Alison's MCV, MCHC, etc. are all low, which means she has microcytic anemia. B-12 deficiency and pernicious anemia are macrocytic anemias, if I remember correctly. The only number that is high is her iron binding capacity.
She has been eating more red meat and taking her Vit. C. After the new year, I'll take her back to get checked again. Unfortunately, autoimmune diseases (or possible autoimmune diseases) seem to be causing problems for the females in my family. RA has become a possibility for my older daughter.
Hopefully, Alison's iron will have improved by January.
Paula

Thank you. I bought Vit. C yesterday to go with the iron supplement. We'll also switch the time she takes her iron to between supper and bedtime so that her stomach should be pretty empty. She also has Type 1 diabetes so depending on blood sugar, it can be difficult to find a time she has an empty stomach. Maybe we should add in an additional iron supplement but only take it every other day to see if we can give her a boost.
Paula

Thank you very much. We will definitely add in Vitamin C with the iron. I've started making sure she has some red meat every day. Our suppers are usually ground beef or chicken. I guess we'll keep using the Bifera for now since it contains mostly heme iron.
Thank you Skylark for pointing out that she is probably still healing. Because we did catch it so early, I assumed that "normal" numbers meant her intestines were "normal".
We'll give it a while longer and then ask the primary care dr. for a recheck.
Paula

My daughter was diagnosed with celiac in August. We caught it super early (we watched the numbers increase over the course of 2 years) so at her 3 month follow-up, all her numbers were back in the normal range. However, her anemia has not improved at all.
Her hgb was 10.1 in July, so she started taking Bifera (recommended by the gastro). At her follow-up her hgb was still 10.1. Her iron-binding capacity was 507 (range of ? - 400). I believe it was her ferritin that was 16 (range 50-170). All those other MCV, MCHC, etc. were all abnormal too. The primary care doctor said to eat red meat and she should be fine. We do eat red meat, not every day but we do eat it. I don't understand why her numbers won't come up. I'm wondering if there's a better iron supplement to use. From what I've read, heme iron is better absorbed by the body and many supplements contain non-heme (plant-based) iron. What do you use?
Paula

Thank you. I will look for both of these. I did find yesterday that using the cut-up lasagna was so much better on her blood sugar (she has type 1 diabetes) than egg noodles. She's only been gluten-free for about 6 weeks, but prior to diagnosis making these noodles with regular egg noodles usually caused quite a bit of trouble with blood sugar.
Paula

Does anyone make a gluten-free egg noodle? One of our family's favorites is Creamy Italian Noodles. Yesterday I bought Tinkyada lasagna, cooked it partially, cut it into egg noodle size strips; then today I finished cooking them and proceeded to make the recipe. I made plenty of extra so my daughter has a couple of meals' worth of "noodles" in the freezer; so at least I won't have to go through the tedious task of cutting lasagna noodles for a while. Thanks.
Paula

Is this a common symptom? My daughter has been gluten-free for about 6 weeks. Celiac was caught extremely early stages. Prior to diagnosis, she would often complain of her whole body hurting - like the body aches you get when you're sick. Those complaints had gone away but have come back in the last 2 days, usually at night. She also deals with Type 1 diabetes and epilepsy; it can be hard to figure out what is related to what. Thank you.
Paula

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